2012-10-27 22.03.58Claire has what?!

I started to become curious about my strange body after traumatic harassment at work in 1999.  Won’t go into it here….it’s all in the section MY STORY.  I had ten years of sleeping the greatest part of each day, for the first five I could not concentrate to read even a page of a book, and seventeen years later I still cannot work full-time and probably never will be able to.  I knew something was dreadfully wrong.  Kind and well-meaning people gave the normal advice:  all in the mind, in some way or other.  I had a pretty shrewd idea it was all in the body, triggered by trauma.  My daughters and I all became symptomatic around the same time, and in January 2013 we were at last diagnosed with Ehlers-Danlos III, Hypermobility Type.  Diagnosis meant freedom in the sense that at last I knew that the invisible aches, pains and inability to function had a real physical cause.  EDS is systemic: it can affect every part of the body.  It presents differently in each person.  Among us we have clocked up broken bones, scoliosis, dislocating and subluxing hips, knees, shoulders and jaws, hip dysplasia, IBS, gastric reflux, gluten intolerance, uterine prolapse, bipolar, depression (most people in chronic pain are depressed – it would be abnormal not to be), fibromyalgia, dysautonomia (with  POTS and mast cell activation disorder), chronic fatigue, chronic sleep problems, a host of minor ailments such as regular twisted ankles, frozen shoulders, bursitis, frozen necks and migraines, as well as several operations, hospitalisations (seven in the past twelve months), regular visits to physios, osteopaths, chiropractors, masseuses and pilates.  We are in pain most of the time.

There is no cure.  Yet.

My hope is that there will be in my daughters’ lifetime.

What I have is an invisible, unrecognised disease.  Even I didn’t know what I had until I was in my fifties.  I look (mostly!) normal.  If I tell anyone I have Ehlers-Danlos Syndrome, the usual reply is, ‘What? How on earth do you spell that?’  Well-known ailments elicit instant recognition and sympathy.  Ehlers-Danlos meets with blank bewilderment.  Daily I am trying my hardest to make sense even to myself, never mind to others, of this newly-discovered condition, unknown to most people, and which has little research or media coverage (no doubt until someone famous starts to tell the world about it).

Welcome if you too have Ehlers-Danlos, or if you’re supporting and loving someone else who has, and want to understand more.  Maybe it is indulgent omphaloscopy to write a blog.   Who wants to listen to my aches and pains when they have enough of their own!  But I want people to know facts about this newly-discovered disease and understand how to support those of us who have it, so that when we say, ‘I have EDS’, it conjures up the real picture.  I’ve found it surprisingly helpful to join forums and read about the journeys of others with EDS, and my aim is to make this something of a personal reflection as well as a repository of helpful articles, links and progress in EDS research.  The link on the right is to my Facebook page – do look.

If this helps others too, then I couldn’t be happier.  Please contribute.  Your ideas and thoughts matter to me.  Thank you for your love and support.

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